Limited success - Interstitial Cystitis Network Support Forum

wyliecoat · 08-14-2006, 08:34 AM

Hi everyone. This is my first post though I've used all your comments to both get information and check my own strategies for coping with IC.
First of all, I'm guessing my IC is not so bad. I diagnosed it myself after years of being medicated for UTI without having any infection. I guess what made it difficult for the doctors to diagnose was that every once in a while I would have a series of genuine E.Coli infections.So I guess I have both issues.

This is how I deal with it now. I take Bladder-Q which is basically a Quercetin supplement with a few other herbs. It started showing real results after about a month of regular use( 2 x2 times daily). I also use alkalife drops in my water 4-5 times a day. Seems to help. With the help of these 2 I've been avoiding the bad flares where I would be hunched over the loo for 3 hours.

To avoid the UTI the doctor prescribed a fast acting antibiotic after intercourse, since that's what sets it off and I've been doing that for a few months and have been infection free. Of course the antibiotic ruins my stomach so I take probiotics for a few days afterwards.

My IC got a break when my dear husband agreed to be creative in the bedroom but we have resumed normal relations lately..still avoiding the worst flares and he is quite patient about the timing.

Diet wise, I have sworn off caffeine and dairy which appears to be a trigger for me and of course low amounts of chilli powder which is really hard to avoid in an Indian vegetarian diet but I think the Alkalife appears to be neutralising most of it.

So currently I am in a condition of moderate discomfort in the pelvic region which is so constant that I have pretty much learnt to ignore it.

The latest thing that appears to be working for me is to switch to distilled water. I had instant results doing that and was pain free for 3 days before I ate some chinese food and over-exercised( so back to a minor flare-up). Am doing some research into water softeners vs water dispensers! Tested my water and found everything normal except the hardness which was off the charts and since calcium and Magnesium appear to be the main minerals in hard water, I guess they don't suit me, at least not in the form they appear in the water.

Also read the posts on B-12 and iron. I also have a deficiency of iron and by the way my hair is falling , also the B-12. Will talk to my doctor today about shots. My mom also had them around the same age and swears by them.

Whew! thanks for giving me a forum to talk about this. people who don't have IC have no way to understand.

Vidya

Janie Miranda · 08-14-2006, 10:32 AM

Welcome to the ICN Vidya. Sounds like you have really thought this through and have learned some good coping strategies.

***Sarojini*** · 08-14-2006, 10:36 AM

It DOES sound like you have devised some good coping strategies. Normally, I'd suggest seeing a doc to see what he/she says about your condition, but if you feel your diet changes and herbal supplementation are helping avoid the nastiest days, then that's FABULOUS

Welcome to the ICN!!

***Katrina*** · 08-15-2006, 09:44 AM

to the ICN!
With dairy as a trigger do you have IBS?
I am iron deficient as well.

vm · 08-15-2006, 02:08 PM

Always glad to see someone come out from just reading - to posting so we can all meet him or her. Glad to have you here. You sound so on the ball with all your coping strategies. You can be really helpful to other patients so I hope you stick around.

wyliecoat · 08-16-2006, 06:35 AM

No, I just don't tolerate dairy well..makes me crampy and bloaty so was happy to give it up. Recently have added diluted buttermilk once a day which I seem to be ok with ( so far!) . Otherwise it's all soy. I eat an egg 4 days a week to keep the protein going..a vegetarian diet with no dairy is probably what is causing the hair loss. But IBS has not been a problem.

Also regular exercise has definitely helped. I walk every day and take dance classes twice a week. Sometimes I get too tired and that causes a flare-up but overall it never gets too bad so I am going to keep it up. I've definitely been better after losing a few pounds. The last time I was IC free for a long period of time was also when I was at my fittest.

One of my theories is that a too full a stomach definitely aggravates the IC (maybe too much pressure on the bladder?) so for me small meals help, specially during flares.

Thank you all for your comments. Keeps me going.

Vidya